I’ve come a LONG way since that day, one year ago, when a doctor told me my life had been saved with the discovery of CVID…

The day I went to get my very first treatment at Johns Hopkins and a) cried, b) fainted, c) threw up, and d) cried some more.

And while I’ve come a long way since then, in many ways I’ve got such a long way to go.

But I’m working on it. On me.

I still worry too much. My disease consumes so much more of my thoughts that I’d like to admit. I worry WAY too much about my future. I worry something bigger will come my way because of my immunodeficiency. Because I have a greater chance of getting so many scary things. And it terrifies me. Any weird pain or bump or well, anything, I go into panic mode.

This is it.

This is the start of something else.

Like a waiting game for bad news.

One day a couple months ago I looked down at my fingers – one felt tingly and numb. It was white as a sheet. This happens to me whenever I get cold now – my fingers turn white and look like a corpse. Apparently I have this things called Renaud’s disease, which can be linked to immune disorders, I’ve learned. It’s no biggie, but just the fact that these are the things I wait for now. I can’t tell you how much I hate that.

Even though I’m doing so much better than I was last year, and my head knows my numbers are up and I can FIGHT infections now…my heart doesn’t always buy it. Every sniffle I get, I’m convinced is going to turn into something huge, and I get depressed. Of course, it goes away, because I can fight it now, thanks to these 52 weeks of IgG replacement therapy, and it shocks me every time. So the fear is still there, rearing its hideous head, but I’ve learned what helps me deal when it strikes.

And I think that’s why I sat down at this computer to write this post. While you probably don’t have CVID, we all have our struggles. Our worries. Our pains. Our stuff. I truly believe this blog was created with a much bigger plan than just sharing a spray painted lamp, or room makeover. Had NO idea at the time, but now it’s plain as day. You never know who you might reach in this crazy internet world we live in, and that’s why I love to share the good, the bad, the ugly, all of it – with you.

I think that the key to dealing with anything is knowing yourself and what lifts you up. It took me a year to figure out – but I try to lean on these when I feel one of those gloomy days settling in. We’re all different. But here’s what I’ve learned about myself; what works for me when the bad days hit.

When life gets too hard to stand, I KNEEL.

I talk to God. I read my devotionals. I go to church.

I read books, articles, blogs by people who inspire me.

I call one of my amazing friends to meet for coffee, or wine, or just to BE. When I have bad days, alone time is not so good for me, I’ve learned.

I dive into a project. The time passes, and I am fully submerged into my creation. There is no CVID in my world when I’m crafting, or painting, or mod podging, or hot gluing.

I call my mom. Usually ends in a good ol’ cryfest. But something about hearing my mom’s voice makes everything better.

I fall into my husband’s arms. I snuggle the heck out of my kids. I watch them giggle. Because really, nothing’s better than a child’s giggle.

I lean on my support system.

And I KNOW – this is the biggest, HUGEST, most important lesson I’ve learned over the past 52 weeks:

One horrible day can and has been followed by one amazing day. You just have to get there.

One day I might get bitter. Really bitter. Staring at my stupid Sharps container filled with empty needles, or getting my personal phone calls from my very own pharmaceutical rep, scheduling the stupid delivery of all my stupid syringes and vials and tubes and alcohol wipes and gauze pads. And I glance at my calendar and have an appointment with one of the trillion (ok, slight exaggeration) doctors on MY OWN TEAM (yes, I have a TEAM). I have my pity party. And a rainy Monday comes, and I turn our coffee table into a stupid sterile hospital table filled with ALL THIS STUFF. And I watch as my husband does his thing for me, playing nurse, because I’m not there yet to do it myself. And I am just having a stupid bad day.

It’s a sunny day. I feel like Superwoman. No disease will bring me down. I got this. I FREAKING GOT THIS. And I will rock the heck out of CVID and shout it to the world. Needles, shmeedles. I answer my phone and talk to my rep, I write down the delivery date and I go about my business, not even thinking twice. I see that Sharps container in the top shelf of the linen closet and I don’t bat an eye. I don’t fear for my future. I take this day, this beautiful day, and I embrace it. And I thank God for all of these needles and syringes and vials and tubes and gauze pads taking up space in my closet, because while it’s not particularly the future I had planned for myself, it’s the future that I’ve been given.

Comments

Liz, thank you for sharing your 52 weeks with us – your fans, friends, cheerleaders, fellow crafters – you continue to inspire us in so many ways and we all wish you continued good news and good health! Sending you a big sunny hug all the way from Florida!

Wow – I teared up on that one. Liz it has been such a pleasure following your blog this past year. While I love your craft posts and get such decorating inspiration from them – I love your life posts even more and you are equally as great at life inspiration. Thank you for sharing your stories and creativity with us. I always look forward to reading your posts as I know I will feel positive and inspired. 🙂 Your light shines bright. Thank you.
Sending best wishes to you on your health from your neighbor in DE.

Love the photo of you looking out the window. Thanks for sharing your journey and not making it all Pollyanna as you do. You seek out beauty in all things. But you also admit when it sucks. That’s what I call balance.

Wow, you’re awesome. Thank you for sharing something so personal with us. It is my hope that someone that is feeling really, really low will read this and realize that THEY can make it through their bad day to the next day because the next day will be better for them, too. So many people can’t see past the right now. They are the ones that need to read your message.

I was recently diagnosed with a malignant tumor behind my right ear. It has been attacking the facial nerve and has caused the right side of my face to be paralyzed. I have surgery in 2 days, and the prognosis right now is good for the cancer, but not for the return of my smile and ability to blink my eye. I understand your fear! I have, though, from the first moment I praised God for what he will do through this experience, I know good will come. I am very thankful for God’s word, and the huge number of people that are praying for my complete healing. Sometimes you feel alone i these odd things that happen, so though I’m not glad that you are going through what you are, I thank you for sharing so that others don’t feel alone!

I’m so happy that you’re my little brother’s wife and you’re the mother of those three precious babies. Your life always seems so perfect when I look at your blog and I forget that you are fighting CVID. You are truly blessed with family and faith. Your energy and strength seem endless. And your humble understanding of what makes you tick is an amazing testament to that strength. You are so inspiring!
I wish I was in Maryland and that we could be closer. Please know that my thoughts are with you today and that I love you so much. I’m a great listener, so bend my ear sometime. Thanks for sharing such a beautiful and hope-filled post.

What a trooper you are! Such a wonderful post – thank you for sharing. You are an inspiration, and I am positive God has a bigger plan for you and your blog. I think your right, your blog is so much more than decorating. Continue to let God use you.

I am so happy to have found your blog. I love your simple afordable decorating style and your way with words. Especially this entry. I went through a bout with skin cancer 5 years ago and I relate to your fear and worry about the future. One day I am happy and carefree and the next day I have to convince myself that a long walk or bike ride on a sinny day are not going to result in more cancer. Your honesty is exactly how I feel. I am also inspired by your words regarding the passing of this first year since your diagnosis. Sometimes things just suck and there’s no other words to explain it. My dad passed away the day after Christmas and I have not truly been looking forward to the summer. I am a teacher and the extra time to fill with my kids has been worrisome. I will probably be rereading this entry often to remind myself how right you are: just because this minute, hour, or day is SUCKY, doesn’t mean the next won’t totally ROCK MY SOCKS OFF! Bless you Liz and may your summer ROCK YOUR SOCKS OFF too!

The sharps container full of needles, the tubing, syringes, gauze….all of it, we’re right there with you. Every week. Only my son, Hamilton, is 2 1/2 now and he’s been receiving treatments since he was 5 weeks old. As his mom, I try to hold on to this thought when things get rough (i.e. the frequent blood draws to check his IGG levels are super fun): Hamilton was going to have a primary immune deficiency anyways, so let us PRAISE.THE.LORD that there is an effective treatment that allows him to live a mostly normal happy life. It’s not fun, but it works and we’re grateful. If I focus on the gratitude it seems to help. Best wishes to you and your family. I’m glad you’re doing so well.

Thanks for sharing your story, I was diagnosed with CVID about a year ago and don’t know anybody who has even heard of it. I haven’t had to do treatments yet but I do have Hashimotos and had thyroid cancer about two years ago and had it removed so I know all about the auto immune issues. I also have three kiddos and the youngest is home coughing like crazy this week and I’m trying to stay healthy. Thanks for sharing, it’s nice to know I’m not the only one going through this.

Hi Patty! Good luck to you – wow, you’ve been through a lot. I hope you are doing well – let me know if you have any questions when you start your treatments! Always good to know you’re not alone:) God bless.

Welcome

Hi there! I’m Liz, a former teacher-turned-stay-at-home mom to three kids, with a passion to create a warm and inviting home on a budget. This blog all started when I’d put the babies down for a nap, and squeeze in a project during those precious couple of hours! My hope is that you visit this page and feel inspired to do a little “naptime decorating” of your own. Thank you so much for stopping by!